It was 6 years ago on January 30th that Maggie was diagnosed with Autism. From that day forward, life was a whirl of navigating the system, making appointments and getting on endless waitlists. I was working full-time while the kids were in daycare. At the beginning there weren’t actually that many appointments to attend, because she either didn’t qualify for services or the waitlist was 3 years long. That’s not an exaggeration by the way. My “free time” was taken up with mountains of paperwork, phone calls, and parent-training classes.
I remember being overwhelmed, but also just wanting help. No more waiting lists. We had 2 private therapists working with Maggie while we waited.
Just as we were beginning to feel like we could breathe again, the new teacher at the daycare dropped a bomb on us when she said that Molly wasn’t doing anything at daycare. She and Maggie’s therapist were worried that Molly might be autistic as well.
This meant so many more appointments, in a much longer process than I ever imagined, because I felt like they were just wrong, and that it wouldn’t take long to prove that. It’s been 5 and a half years and we are still trying to answer that question.
There were days that I needed a minute-by-minute schedule of how I could get the kids to the appointments they needed to be at. I would be swapping kids out at the daycare, hiding behind cubbies in the hope that the other kids didn’t see me and get upset that it wasn’t time for them to come home yet. And I was in constant fear that I was going to drop a ball. I worked at night or in waiting rooms to make up the time. I had to make this work because these appointments were going to fix everything. Appointments meant hope. I couldn’t drop a ball.
Eventually we decided that I needed to be home because there weren’t enough hours in the day. I could breathe again. The kids were in school by now, and daytime appointments were going down. Eventually they almost stopped. I started to feel silly when people asked me what I did all day, because I was realizing that I wasn’t running to appointments. I began to think about returning to work, but still had some details to work out such as before and after care.
It’s a good thing that I don’t make decisions quickly, because here I find myself deep in the thick of appointments again. We’re getting help for both girls from a few different programs, as well as monthly trips to the pediatrician while we try to solve the medication mystery.
There are logs to fill out, questions to answer, activities to make, meetings to have, and more phone calls. All of it is meant to be helpful. Some of it is. Some of it feels like a make-work project in guilt.
Yes I realize that it sounds stupid to say that I couldn’t find the time to check some boxes. But it’s more than checking boxes. It’s one more acknowledgement that things aren’t working. That everything is getting worse instead of better. It’s one more checkmark that other parents don’t need to make.
I find myself wanting to cancel everything and unplug the phone. I’m not sure if that’s stupid or brave. Stupid to turn down help that could make things a little bit better and help my child and my family? Or brave because turning help away that is causing more stress is the unpopular decision?
I just want my daughter to stop feeling sad and angry. And I want the rest of us to stop feeling like we need to walk on eggshells all the time. I want the next appointment to come with a magic wand. I want a fairy godmother. What’s the intake number for that program?
Christa Clips: Save-at-Home-Mom says
ah, courage to you, Tara. Is there a way to unplug for a bit without losing your “spot”? Good for you for recognizing the value of your own instincts – smart, smart mama!
Tara (Nerdgirlmom) says
Thank you Christa. I somehow did the opposite and got myself on 2 more waiting lists that other therapists keep asking me if we are on. Gah!
JILL says
You are the most amazing mother and person! I want your daughter to stop feeling sad and angry and I want you to feel the eggshells are gone. I want that magic wand to help your family, mine and so many others. Unfortunately, all I really have the power to do is tell you that you are not alone. I love you and I understand that line between wanting to shut everyone out and wanting to talk to every single person ever hoping to find that perfect person with all the answers. I know the feelings of, “is this just regular kid behavior or something that won’t ever change?” Of finding us having fun together and then stopping to think, “could I be making these moments more teachable ones?” instead of simply enjoying childhood as it flies by us.
We have been on the same journey, separate paths for the same time. January 2008. Carl was 26 months old. You know, many times I have drawn support from you. Well, you actually have no idea how many times. Thank you.
You are not alone. I love you!
Tara (Nerdgirlmom) says
Thank you Jill! While I wish our journeys weren’t so challenging, I am very glad that we can support each other through them! You said it so well about alternating between not wanting to talk to anyone and wanting to talk to everyone all at once. Thanks Jill and I love you too!
Magnolia Ripkin says
Oh Tara, what an incredible post. It is so wrenching. My boy has issues that are like a moving target to figure out. It becomes everything, and sucks in the vortex of all things. I truly wish we could get answers or get a recipe that works. My hug to you.
Tara (Nerdgirlmom) says
Thank you Magnolia! I’m sorry that you are dealing with the moving target too. It’s all-consuming. I hope for answers for you as well, and look forward to the day that we can give those hugs in person!
Journeys of The Zoo says
Dear Tara,
I want to say something funny because that’s the way I deal with situations like this. But I’m at a loss for words.
I hope you know that I’m reading along and wishing that everything works out as it should. Whatever that means.
Besos, Sarah
Jessica @ Just a Mum? says
All I’ve got are hugs and good thoughts – but for what it’s worth, I send you lots of those. xo
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